Friday, October 15, 2021

Meal Planning in Survival Mode


Medical Stuff

We juggled four doctors' appointments this week, which are always time-sucks from homeschooling. I'm grateful for skilled, educated doctors and for excellent health insurance. Next week, three doctors' appointments scheduled so far . . . .

It was rather a difficult week for Thomas's GI system. After one 30-minute episode, he outright asked me why his surgeon cannot perform his reconstruction surgery sooner than November 2nd in order to fix these problems. He is excited and eager! While I remain in fear much of the time, Thomas provides a good example for me of being grateful that these problems can be at least improved surgically, since they cannot be solved medically.


Homeschooling

. . . is hard, so very hard! This life is not easy and challenges me nearly daily to my limits of knowing what on earth to do.

Like many moms, I think, I slip into thinking my homeschooling is "nothing," just a natural extension of motherhood, thus leaving me mystified about why I am drowning and don't have time for starting a foundation, fundraising, volunteering, writing books, training for a marathon, getting my hair and nails done, going out for massages, "meeting up with the girls," and so forth. When I remind myself that homeschooling is absolutely a full-time job equivalent to 40 hours or more, and then I'm parenting six kids and running a home on top of that, I feel better about how I'm managing.





Milestone

Chris and I went on a longer date that stretched into the evening! For Thomas's four months of cancer treatment, we rarely (if ever?) left him with a babysitter. Then for his four and a half months in the hospital, the only "dates" that occurred were if we ate a meal in the cafeteria while he was under general anesthesia having some procedure. Then in the six months since discharge, Chris and I have only gone on lunch dates of one hour's duration. 

This week, we went to a late lunch at a fancy-dance restaurant where the food is positively art, and then a 4:30 movie, so we weren't home until the late hour of seven o'clock. Little boys were in pajamas and ready for bed, but the babysitter did not have to give tube feeding or medications.


Meal Planning

Since coming home from the hospital, I've established about six regular dinners that we eat every single week. On Sundays we eat at a restaurant. That may seem like survival mode, and maybe it is, but I've watched us go from being fed by others (through meals delivered and restaurant gift certificates) nightly for six months to my being able to cook for us . . . and that makes me pretty happy!

I don't shop at the grocery store, but use InstaCart instead. On some weeks, I've been overwhelmingly busy, or some medical urgency has come up on shopping day, in which case all I do is open last week's order of InstaCart and hit "REPEAT."


Daily Breakfast

I cook a hot breakfast for the family every day.

  • A bread product that rotates among: bagels, frozen waffles, leftover pancakes from Friday nights, or toast (I have found Arnold Keto bread that is such a good choice for Thomas!)
  • Sausages
  • Fried eggs
  • One type of fruit: rotates among strawberries, apples, grapes, oranges, pears, bananas
  • Sometimes I put out steel cut oatmeal, but only about half the kids like it.


Daily Lunch and Snack Foods

Lunch is catch-as-catch can and something each person makes for himself (except for the boys ages 4 and 6). People often eat leftovers. Sandwiches are usually based on peanut butter: we've switched to no-sugar added peanut butter. We've replaced Nutella with Peanut Butter Co.'s Dark Chocolate Peanut Butter (a low-sugar PB with cocoa). We use lower sugar preserves (granulated sugar, but less of it) and a no-sugar jam (sugar alcohol). A few of the kids will eat deli meat sandwiches.

Thomas needs to have three snacks per day also (mid-morning, mid-afternoon, and right before bed). Some common choices are:

  • Salami, pepperoni, deli ham, deli turkey
  • Chicken nuggets, grilled chicken, shredded chicken (+ no sugar BBQ sauce)
  • Fried egg or hard boiled egg
  • All manner of crackers (just have to limit them for Thomas, and try to pick higher-protein ones)
  • Nuts and nut butters
  • Protein shake (current winner is lactose-free Core Power by Fairlife)
  • Higher protein cereals with lactose-free milk
  • Apple or applesauce (no sugar added)
  • Yogurt (typically Greek for higher protein)

Every carbohydrate Thomas eats must be paired with protein, so he is extremely accustomed to the question, "and what protein will you be having with that?"


Dinner This Week

Saturday

  • New recipe to try . . . Slow Cooker Apple Butter Boneless Ribs (using no-sugar added apple butter)
  • Tater tots (+ no-sugar ketchup)
  • Peas


Sunday

  • Restaurant


Monday

  • Pasta 
    • After trying numerous varieties of whole wheat, low carb, and high protein pastas, I now buy the Barilla protein pasta.
    • We went from serving pasta most nights of the week to only one night weekly. It's so many carbs for Thomas that I don't want to present such a temptation.
  • Jarred sauces available (marinara, alfredo)
  • Alternate between smoked sausages and meatballs (all store-bought!)
  • Roasted broccoli


Tuesday

  • Taco night
    • Chicken, beef, beans
    • Hard and soft shells,
    • Rice
    • Chips and all the condiments


Wednesday

  • Baked chicken tenderloins (Kirkland frozen)
  • Sweet potato casserole (recipe with little added sugar)
  • Bread rolls (frozen)


Thursday

  • French bread pizza (made with frozen mini baguettes, Rao's low-sugar pizza sauce, shredded cheese, pepperoni)
  • Some weeks we order Jet's pizza, which offers a cauliflower crust pizza that is better for Thomas


Friday (meatless)

  • Pancakes 
    • After experimenting with many pancake mixes and recipes, trying to find ones that are lower carb and/or higher protein, I mostly use the Kodiak brand now. I prepare the mix with milk and egg, so each 4" pancake provides 11 grams of protein, which is as much as 2 oz of chicken!
    • I make a double batch, and then serve leftover pancakes during the week.
    • For pancakes and waffles, we've stopped serving maple syrup because it is just too much .sugar for Thomas. I offer canned whipped cream, date syrup, berry syrup, or cooked apples. We let the kids use barely a drizzle of sweeteners anymore.
  • Cooked apples (sliced, cooked in a pan with butter, a little shake of cinnamon sugar)


Desserts

Desserts are a sore subject so it is good we have dessert only once or twice weekly.  Do I let the five kids have more delectable desserts and always make Thomas feel like the left-out kid eating his less-delicious dessert? I'm just not ready to put him through that, so I've really reduced the sugar available in the house. The older kids get other opportunities for sweets when out and about, but I want Thomas in his very own home not to feel envious and sad.

  • Ice cream: The best lower-sugar ice cream we've settled on is made by Blue Bell. We've tried many, many ice creams that are low sugar or no sugar or keto. Low-sugar ice creams are still all carbohydrate, so Thomas has to eat a protein simultaneously.
  • Ice cream bars: We like the Yasso Greek yogurt bars and I appreciate that they are high protein!
  • Baked goods: I've done much experimentation with homemade baked goods. There are so many flour products and sweeteners to combine! It makes one's head spin. I have just a handful of tried-and-true low sugar, high protein baked goods that Thomas enjoys and that work for his body. If I make a batch, I try to double it and freeze the leftovers.
  • Crustless cheesecake: We've discovered that a low-sugar cheesecake is actually a good choice for Thomas!
  • Candies: We have found some low- or no-sugar varieties of lollipops, chocolates (favorite brand is Lilly), and candies that work for us. We've tried many, many, and some work, some don't. Unfortunately, most are made of sugar alcohols, so eating more than a bite or two can wreak havoc on the GI system, especially for anyone who has had bariatric surgery.


Sunday, October 10, 2021

Camping Outdoors and Camping at the Hospital

This weekend was the father-son Fraternus campout, so I had planned some "camping activities" for the littlest boys at home, as they were envious of the Big Camping Trip. Unfortunately, Thomas developed a fever, launching his post-splenectomy fever protocol, so I ended up making two trips to the Emergency Department instead.

I never knew a spleen was important until Thomas lost his! The spleen fights off some specific bugs, and especially for the first two years after losing one's spleen, one is at some significant risk of a particular infection that can lead to sepsis and death within 12-48 hours.

It's not something any doctor wants to miss diagnosing.

Thus, for these first two years, Thomas spikes a fever and we head over to our friendly Emergency Department for blood cultures, plus CBC and liver function tests, along with receiving two doses of IV antibiotics 24 hours apart. We'd only run this protocol once, back in August for a virus, and after having to spend the night in-patient, I brokered a new deal with Thomas's surgeon and oncologist: If Thomas goes in for fever, we will get his first IV antibiotics, then go home to sleep, and return to the Emergency Department 24 hours later for the second IV antibiotics.

Suffice to say, the weekend wasn't as fun as we planned, since Thomas felt awful and wept for Friday overnight and I ended up staying awake about 42 hours in a row. Chris valiantly returned from camping to babysit for a few hours on Saturday morning, but Mary (12 and mature beyond her years) filled in a lot of gaps, including when I had to be back at the E.D. Sunday by 7:00 a.m.

I had recently bought two non-fiction books to occupy me during Thomas's upcoming surgical hospital stay. Unfortunately, I read the first one in its entirety during our 7-hour E.D. stay on Saturday, and read half of the next book during our Sunday stay.

Now I have to find some new, engaging books.

We did have a few nice moments. Once Thomas received some antibiotics and Advil, he perked up and enjoyed hanging out, eating snacks, watching movies, and playing with the little gifties from Child Life.



I had promised the five kids at home a full hot dog roast and s'mores over the open firepit, but was bleary eyed with exhaustion by Saturday night, so we boiled hot dogs and cooked s'mores in the toaster oven instead. I even calculated nutrition grams so Thomas could have his own version of s'mores without getting sick:
  • only one half graham cracker
  • only four tiny squares of Lily's no-sugar chocolate
  • only four mini marshmallows
  • = 16 grams carb and 4 grams sugar
  • plus I gave Thomas BeneProtein simultaneously, which adds 6 grams pure protein and helps slow down the sugar digestion



Then I let the boys sleep in sleeping bags on the floor of the master bedroom as their form of "camping."

Meanwhile, John and Dad had a great time camping!





Friday, October 8, 2021

Fall Break 2021

We had a week off of school, although we did not take the opportunity to do any big adventures. Having just flown to Buffalo, we were ready to relax at home!

Thomas received a new police officer costume, so he's been patrolling the grounds all week, keeping us safe . . . 


"Mama, I was trying to look very serious."

One day, I took the children to Lineberger's Farm to pick Muscatine grapes and pumpkins.




We had four doctors' appointments, hosted one very fun play date, and had the usual hockey, Fidelis, and music lessons.

Much planning is going into Thomas's upcoming surgery and much writing is going into the book I'm trying to write for him. The silver lining to insomnia is that I have extra time for these pursuits. I planted our fall pansies, ornamental peppers, and ferns, as well as organized compulsively as a therapeutic for my anxiety. At least it's productive.


Friday, October 1, 2021

Endoscopy and More Surgery Upcoming

Just shy of October and I put out the first fall decorations this year!



Milestone #1

Thomas graduated from Physical Therapy! He exceeded all the goals we set for him. He can walk, run, hop, and ride his bike and scooter. Yes, his gait remains funny; yes, his left ankle, in particular, and legs overall remain tight; and yes, his overall muscle mass remains very reduced. But we parents can continue to work on strength and endurance with our active little fella! 


Milestone #2

Thomas has learned how to operate most of his tube feeding pump! While he certainly does not know how to program it for the night, he has watched us silence alarms, hit pause, disconnect his tube, reconnect his tube, and hit resume numerous times nightly for six months. This week, he asked to start doing it himself and, while I supervised, he did it all perfectly. This means he can get up in the night to use the restroom without us even getting out of bed.

This is a Really Big Deal. For lo these six months, once Thomas is connected to his tube at 7:30 p.m., I did not leave the bedroom until morning because Thomas needed an adult supervising. What if my boy needed help? He would be tethered to his pump in a very vulnerable way! A homeschooling mom of six has a lot of work to do in the evenings, none of which I could ever do. Instead of my spending time with my husband or older children (who do actually need their mother) elsewhere in the home, they have all come into the bedroom to whisper conversations with me or watch a movie on the iPad in bed.  I never went anywhere in the evenings to have a social event with other adults.

I'm not quite ready to completely say Thomas can handle his own pump such that I won't even be in the room, but we are on the cusp!


Endoscopy and More Surgery Upcoming

Thomas had an endoscopy procedure last Thursday which is the final of a series of procedures his surgeon was doing to gather information about how Thomas's GI reconstruction is functioning 10 months post-gastrectomy.  This information has resulted in Thomas's surgeon recommending an additional GI reconstruction surgery which will occur within about a month.  Our hearts are heavier than we can describe with this news; however, we know it is the right move for Thomas.  He is still retching and vomiting daily (often several times per day), and his weight is not progressing as hoped (he has not gained any weight and is five pounds less than he was 10 months ago).  His current GI reconstruction was done under emergency conditions, with lots of post-surgical inflammation that limited the surgeon's options.  A more intentional and planned approach is needed.

You might think that after Thomas going under general anesthesia 25-30 times, I'd feel cool as a cucumber about it. I remember the very first time, which was for his diagnostic MIBG scan after we found out he had cancer: I was terrified, since general anesthesia always carries a risk of death, and I couldn't fathom my four-year-old "going under," and I believe I got in touch with my friend F---- whose son has had to receive general anesthesia many times as well.

Now Thomas has had general anesthesia 13 times for surgeries, at least 6 times for cancer scans, and then numerous other times for procedures in Interventional Radiology, at least one prior endoscopy, and other miscellany. 

I don't know why I become so tense because I'm not worried about him having a reaction to general. Maybe it is because I am responsible for coordinating everything: answering all the intake questions a few days prior and then the day before . . . knowing which meds to hold 24 hours prior (they conflict with anesthesia), and then being sure to hold all meds the morning of . . . setting my alarm to turn off his tube feedings in the middle of the night . . . making sure he remains NPO that morning . . . packing his favorite stuffed animal and everything he needs, including snacks for when he wakes up since hospital food is full of sugar . . . .

I don't know: it's just a lot and now I know I will feel like a bristling badger the night before a general anesthesia event and I simply anticipate getting almost zero sleep that night.

Of course, that's what happened, so I went into the day having caught only a few snatches of sleep. Chris isn't sleeping well either these days, which is no great shakes. I hold things together during times of tension and then I crash, so that meant coming home from the perfectly fine endoscopy and my ordering delivery pizza for dinner (which I realized I haven't done in many months!), drinking a glass of wine, and hiding in my room to read a new book.

On a related note . . . Thomas achieved another milestone: This was the first time he was wheeled back to the OR without any Versed. For those who don't know, Versed is a medication that makes the child very happy and calm and also will cause the child to later forget what happened. It's basically a miracle drug for sending tiny tots into scary procedures without Mama and Daddy. Thomas has been in the hospital and had so many procedures that he really is calm as calm can be: when the nurse asked if we needed to give Versed this time, both parents and staff agreed we probably did not! Thomas did great wheeling into the OR fully awake, and it's always good to give one less medication (especially heavy hitters like benzodiazepines).


New Book

I finally received my pre-ordered copy of Better than OK: Finding Joy as a Special-Needs Parent by Kelly Mantoan, whose little old mommy-blog I have been reading for years. I already love this book, which is a lifeline to what I am going through. (I rarely want to speak on Chris's behalf so I will stick to myself.) I am often reading one paragraph and having to put the book down just to cry and digest the words, but then I can't wait more than a minute or two before I'm compelled to open it back up and keep reading.



Speaking of Books

I am in the midst of a project writing a book for Thomas, what psychologists would call a trauma narrative. He approached me to have a conversation last week and it turns out he has forgotten much of the zillion conversations we've had about his cancer and surgeries over the months. It seems astonishing because we talk open openly all the time, but especially everything he learned about his cancer was 15 months ago, which is 25% of his entire lifespan! He was four and turning five when we had those most important conversations covering things like CANCER IS NOT YOUR FAULT OR CONTAGIOUS AND YOU DID NOTHING WRONG. So, Mama has spent this week starting to write a book for Thomas telling him his own story to start to finish, written for a six-year-old audience, and illustrated with photos. I plan to have it self-published so it looks like a real book (carrying weight and authority), not just a stapled print-out on copier paper. What else is a better use of my time than writing when I'm awake at four or five in the morning each day?


Arts and Crafts

I'm learning how to knit again, something I was proficient at in my 20s but since lost all ability to do. I'm trying to find ways to RELAX. Another daughter is knitting a stuffed teddy bear for Thomas. She also is sewing up a storm on my sewing machine. All of this means my sewing room is a disaster area again, but at least that reflects LIFE AND CREATIVITY. Meanwhile, Thomas never stops doing his paper arts and crafts, leaving piles of paper scraps, tape, glue, feathers, puff balls, crayons, pencils, and pens in his wake . . . but, again, LIFE AND CREATIVITY.


Wrapping it Up

We are wrapping up a week of unpacking eight suitcases, attending four medical appointments besides the endoscopy, a lovely social visit from our old Scottish dance teachers, and completing extra schoolwork, our having to catch up from missing Friday and Monday's assignments for travel. We are really hoping to finish most of the extra work today so that our upcoming week of Fall Break from the hybrid homeschool is truly and honestly a week of rest! 


Tuesday, September 28, 2021

Oktoberfest 2021

In the background of all last week was a hustle and bustle of preparations for our family spending the weekend in Buffalo, New York, at the annual family Oktoberfest. For the third time we traveled with Thomas since his hospital discharge six months ago: the journey was hard in the ways I knew it would be hard, but I was able to navigate the "new normal" difficulties and the trip was so well worth it.

Friday

Chris drove the 12 hours with three children and all our luggage while I flew the 90-minute flight with my 12-year-old as my invaluable helper and the two littlest boys.


The COVID restrictions of air travel were not as bad as they could have been. David (4) has been spared wearing a mask once ever in these 17 months since COVID hit the news waves and he's rarely even seen others wearing masks, so I had to actually teach him about masks ahead of time since they would be required on the flight. I bought children's masks decorated with dinosaurs, which he thought was pretty cool. 

Since Thomas is accustomed to wearing a mask in medical settings, he was a bit of a kapo, correcting David repeatedly when his mask would fall below his nose.


Rental Car Fiasco

Once at the Buffalo airport, I took my band of travelers to the rental car kiosk, having received the email saying that because we are USAA members, we get Preferred Status: I was instructed to skip the upstairs counter (where the lines of people were shoulder to shoulder) and go straight to the kiosk where my vehicle would be waiting for me.

Unfortunately, the woman in the kiosk and later her manager told me that no, my reservation did not have Preferred Status. I showed my email to no avail. They agreed that USAA members are Preferred and I showed that I was a USAA member, but still: my reservation was not Preferred. Nope, negatory, definitely not.

I had no choice but to trek everyone back upstairs. By this time, Thomas was crying and he continued crying for the entire hour-and-ten-minute debacle of renting a car.

Upstairs we rented our vehicle without problem, travelled back downstairs, retrieved our keys, and approached the vehicle, where we found that the two booster seats we rented were replaced with five-point harness car seats. For those who don't have little kids currently: five-point harnesses are too small and not appropriate for tall kids ages four and six.

I marched back to the kiosk to request the boosters I rented and while the initial request was sent out into the mists to "find those boosters!" I returned to my vehicle: I discovered I could manage to fit the four-year-old into a five-point harness, so I let the lady at the kiosk know I needed only one booster.

It seemed like such a small request. 

I returned to the kiosk something like five times every ten minutes to check on her progress. 

Oh yes, someone is searching for your booster.

We didn't have a booster, so the man went across the street (to the hinterlands?) to search there.

At one point she suggested, "Maybe you should just drive to Wal-Mart and buy a booster." Yes, I suppose I could have done this with my six-year-old just sitting there, regular seatbelt flapping across his face because he is too short. At some point, I suppose I would have reached that point of desperation.

On one of my visits, one of the "rovers" (workers who run all over doing tasks instead of staying in a kiosk) returned and answered, "I thought someone else got the booster for her, so I haven't even been looking for it."

Then the lady called the other rover, who returned to the kiosk and said, "Yeah, I got her booster and I put it in her car," pointing to another car across the lot.

But before we would have trekked over to that wrong car that held my booster, the man directed me to walk with him over here . . . we walked two cars away from where my vehicle was parked, and we looked behind a parked rental car, where there was an entire stack of booster seats. This was the spot where this rental agency stored its booster seats. It was probably 30 feet away from where I had been standing this entire time, but obscured from view, and three other employees had no idea it was there.

That was a fun discovery.

Village Living


So, I finally got my booster and was able to drive toward freedom with crying Thomas, only 70 minutes after arriving at the rental car kiosk.

We then got a meal at a great family restaurant before driving the hour to the biggest village near our ultimate destination (a family campground on a mountain) because this village of 4,200 actually has a hotel. 

One hotel.

Later that evening, I had to take the kids to a grocery store, so I looked on GPS and saw the nearest one was 3 miles away. I set out following GPS, which took me on a very circuitous route through the village, including strange turns and going down an alley . . . only to arrive at the grocery store which I could then see was several hundred feet away from the hotel and connected by three parking lots which I could have driven straight through.

Saturday

We checked Yelp for reviews of breakfast restaurants in this wee village and found two choices. We ate at the Apple Dumplin', a darling, old-fashioned restaurant located inside a house. Again, I loaded up my GPS only to turn left out of the hotel and drive a few hundred feet in that direction. We walked in and I noted that the various regulars all watched us . . . strangers in town! The restaurant had a prayer box available for receiving slips of paper with prayers written on them. It was such a cute place that we ended up eating there both mornings.


Then we were off to the campground where I believe 28 adults and 22 children (18 of them boy cousins and only four girl cousins) and 5 pet dogs gathered for a day of festivities. It was basically an eat-a-thon, with the latest German food always being rolled out for more snacking. Children used tire swings, climbed logs, went down slides, caught frogs and salamanders, rode bikes, tossed the football, and painted rocks. Folks of all ages rode the two ATVs on the trails through the woods. Some of the ladies sang songs from The Sound of Music. There was a fire pit blazing all day.






















We were so delighted and appreciative that Aunt A----, who is the matriarch of that branch of the family, was still able to join us, despite her very delicate health. Her husband Uncle C---- has passed now, so the honor of tapping the keg has fallen to his dear wife. Everyone fawned on Aunt A---- and she spoke many words of love and advice to her many family members, and shed not a few tender tears.


















Cousin C---- has made amazing photo collages representing each year they have held the Oktoberfest and they were mounted for all to enjoy trips down memory lane.




Watching a movie back at the hotel


Sunday

The consensus is that if we attend next year as a whole family, we really want to try to tack on at least one more day rather than be so rushed. This is easier said than done, given needing to make up the missing school days, but we have high hopes.

After Mass, we ate lunch at Ted's famous hot dog restaurant in Buffalo. The boys could hardly believe they were given official paper hats for free.



Then we stopped by to visit Cousin N--- and J----'s horse farm. Much to our regret and sadness, my crew had to rush off to the airport after too short of a stay, but Chris's crew was able to linger and enjoy the hospitality of a great spread of food and being able to feed the farm animals and ride the horses.











The flight home went smoothly after all, despite being rushed for time driving there and Thomas having a challenging medical issue during the flight. My anxiety tried to get the best of me, but I won that round.

Thomas was very anxious about his ears hurting during takeoff--something he's only heard about from me, never experienced. On the first flight, the boys chewed their ear-pain-preventing gum way too soon, as the airplane just sat on the tarmac, slowly inching forward for a very long time before taking off. So on the second flight, I told them they had to wait until I knew we were speeding up for takeoff. Thomas was not comfortable with me holding onto the gum, so he held the gum. He wasn't comfortable with the wrapper staying on, so he took it off for quicker consumption. Then he just watched his stick of gum intently and asked me over and over, "Are you sure we're not about to take off?" until finally it was time: "Okay, now you may chew your gum!" Ear pain averted, he was much relieved.


The rest of the crew drove home over Sunday and Monday. I'm always quite relieved to have all my chickadees back in one nest. I don't like them all being scattered.



Another successful Oktoberfest in the books! Here's to being brave and living life under new circumstances!